“Some people actually feel that way”: the invisible problem of “Me Before You”

Still from Me Before You (Credit: The Guardian)

[TW: Frank discussion of suicidal ideation]

I spent most of last fall wanting to die.

When I had moved overseas to the United Kingdom in the spring, I had brought with me a three-month supply of the medication I take every day to remain conscious. However, a labyrinth of clinical bureaucracy left me unable to obtain a new prescription for it, and by early September I had run out. Without my pills, I began (once again) to sleep sixteen, eighteen, twenty hours per day. When I finally woke, I felt as though I hadn’t slept at all. It took fifteen minutes to muster the strength to go to the toilet. I couldn’t summon the energy to shower or buy groceries.

My thoughts were not working. I tried to boil water by putting the kettle in the fridge. I mixed up words in conversation — “station” for “statue”, “pepper” for “plate.” I would walk into the next room and have no idea how or why I’d ended up there. I’d attempt to write a sentence, and glitch — the first few words of it looping over and over in my brain.

The mere fact of waking up every day was torture, because every waking moment every part of my body screamed to go back to sleep. My bones and muscles ached as though I’d just run a 10k. My eyes burned and fluttered and rolled back in my head when I tried to focus them. My head felt like it was filled with a thick sludge and every minute of consciousness was me fighting like hell not to drown in it.

Every day as I drifted off to sleep again, I hoped I wouldn’t wake up.

*****

The film Me Before You premiered last week, to the ire of the disabled community. Descendant to a long lineage of films that portray death as the preferable alternative to living with a disability, Me Before You tells the story of a young woman who is hired to care for (and inevitably falls in love with) a quadriplegic man who is pursuing assisted suicide. Although he reciprocates her love, he ultimately chooses to end his life nonetheless.

(I should note here that beyond watching the trailers, I have not engaged with this movie, nor the book on which it was based. I’m familiar enough with the tropes it espouses, having already seen them in films like Million Dollar Baby and The Sea Inside. I have no wish to contribute money to a project that already disgusts me.)

Braver disability bloggers than I have, however, read the book, and have noted that although the story ostensibly figures around the hero’s desire to die because he is disabled, his voice on the issue is rarely heard. It is mostly left to other, abled characters to explain how, “if they were like that, they’d want to die too.”

Dominick Evans argues that,

The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true.

Evans’ argument, and the argument of the Not Dead Yet campaign in general, is that by continuing to depict ableist narratives of people choosing death over disability, the mainstream media erases the experiences of disabled people who desire life. This is certainly true, but I would argue that these narratives also take part in another erasure: that of disabled people, especially invisibly disabled people, who do desire death.

The stories that Hollywood chooses to tell about disability and suicide are rarely complex. A beautiful, physically active person is stricken down by a terrible accident or illness. Having lost their physical capabilities, they decide that life is no longer worth living, and tragically take their own life or receive assistance in doing so. The audience feels a collective sense of noble, tearful pity. This is the abled vision of disabled suicide.

*****

Perhaps unsurprisingly, the lived experiences of disabled people who contemplate (and choose) suicide are much more complex.

We contemplate suicide not because of some moral rejection of our own failing bodies, but because there are days when it just hurts too much to have to be conscious. Our thoughts and decisions about suicide are not grown in isolation in our minds, but in the lack of funding for research into effective medications, the exorbitant costs and Byzantine commissioning practices for existing medications, the years-long path to diagnosis in the face of fragmentary healthcare systems and widespread clinical ignorance, and the battle for accessibility and legitimacy that we have no choice but to fight every day in a thousand different ways.

Nor are we able to be open about wanting to die. People who are invisibly disabled do not get to choose that life is no longer worthwhile. There are no stories about the woman who sleeps her life away, and wakes up not to a kiss from a prince, but to a throbbing headache, growing piles of bills and dirty dishes and garbage, and the knowledge that the friends, love life and career she dreamed of are drifting farther and farther out of her reach. We never see her story because on that one good day when she has a few hours of energy to shower, get dressed and leave the house, she looks perfectly normal, even nice, because that day is a special day and so she puts on a bit of makeup and braids her hair and wears her nice shoes. But on the bad days, we don’t see anything at all, because she never manages to leave her bed.

So when she tries to tell someone that she’s not sure she wants to live any more, she’s met with confusion, perhaps a bit of outrage, and the damning sentence that she simply has to continue to live. Some particularly kind-hearted person may tell her to “think of all the things you have to live for,” which cuts particularly deep as she remembers just how many plans she had that are no longer possible, how many people she’s disappointed, and how deeply boring and empty her life has become. And so she decides not to talk to people about it any more, goes to bed, and wishes once again that she won’t wake up.

*****

This is what one experience of wanting to die while disabled looks like. It is not simple or romantic or heroic. This is the kind of narrative about disability and suicide that needs to be told.

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard